Rare Disease Advocacy in Connecticut
Rare disease advocacy in Connecticut is critical to improving access to diagnostics, treatment, and coordinated care. Because key healthcare decisions are made at the state level, strong local advocacy helps ensure better coverage, resources, and outcomes for the rare disease community across Connecticut.
Jump to:
- How to Get Involved
- State Rare Disease Contacts
- Take Action
- RARE Young Adults and RARE Artists
- State Resources and News
Events
See All EventsState Organization
Name: Rare New England
Website: http://rarenewengland.org/
Contact: Nicole White
Email: nicole@rarenewengland.org
U.S. Congress Scorecard
See how Connecticut’s Members of Congress are supporting the rare disease community with this Legislative Scorecard.
RARE Disease Advisory Council
An Advisory Council has not been established in 2022.
See more information on established rare disease advisory councils.
Rare Disease Caucus
Current Bipartisan Rare Disease State Legislative Caucuses.
Don’t see your state? If you would like to be part of the process to start a rare disease state caucus, please reach out at advocacy@rareadvocates.org.
Newborn Screening in Connecticut
Newborn screening programs vary widely by state, leading to disparate health outcomes. While some states screen for thirty diseases, other states screen for over sixty.
RARE Young Adults
RARE Young Adults brings together motivated members of the rare disease community, ages 16–30, to build confidence, strengthen advocacy skills, and create meaningful impact in public policy.
Connecticut Advocacy Resources
Insurance Commissioner
- Joshua Hershman
insurance@ct.gov
Department of Insurance
Board of Pharmacy Executive Director
- Angelo DeFazio, R.Ph
DCP.PharmacyCommission@ct.gov
Health and Human Services
- HUSKY Health For Connecticut Children & Adults
- Medicaid in Connecticut
- William Halsey
william.halsey@ct.gov
Department of State Health Services
State Legislature Calendar
- State Legislature in Session – Click here
- Which Dates is Your State Legislature in Session – Click Here
State Legislature Website
Drug Utilization Board or P&T Committee
DUR Board Website:
Connecticut Medical Assistance Pharmacy Program Drug Utilization Review (DUR) Program
Meeting Schedule:
Meets quarterly (check website for schedule of meetings).
Contact:
Heather Kissinger, heather.kissinger@acentra.com
